Give patients (that’s you) access to all their (your) data – so they can help

I’ve just returned from Toronto, where I gave the opening keynote at the Medicine 2.0 Congress. It was titled “Gimme My Damn Data,” which is an unconventional title for an opening address, but I meant it. Here’s why.

Thanking Dr. Gunther Eysenbach for his extraordinary decision to have a patient open a medical conference

A new world of participatory medicine has been growing for years, largely unnoticed. In this new world, healthcare is not a one-way street: empowered patients are engaged in their care, actively collaborating with their physicians, sharing responsibility for their care. The providers (doctors, nurses, etc) are still the providers, but the patients share in both the knowledge and the responsibility for how it all turns out.

And, certainly, the decision making.

This requires that patients have access to their medical data. (Whose data is it, anyway?) As my primary physician Danny Sands, MD MPH, says, “How can patients participate if they can’t see the data?” But in today’s world (America and, I’m told, many other countries), access to our health data is anything but easy.

In the USA the HIPAA act guarantees that we can get it – but it can take months, which is absurd in a crisis. And, law or no law, Deven McGraw of the Center for Democracy and Technology reports that problems with data access are the #5 complaint#3 HIPAA complaint* reported to the Department of Health and Human Services.* Deven updated this in an email, saying “it’s consistently the third based on this HHS source.”

Clearly, what patients want and are asking for is not an accomplished reality throughout the world today. This is unacceptable. Lives are at stake. I think people – especially sick people – have a right to take their records and seek care elsewhere. (And that’s beyond the basic issue of a person having access to their data on general principle. Imagine if you couldn’t see your banking information!)

Some providers are great about this. My own medical records, which I can read anytime, are on PatientSite at Beth Israel Deaconess. But there’s still no way for me to get all the data out: I can export some information, but not all. And my hospital’s much better than most: most have no way at all to give you your data – except by fax machine.

There are many technical issues to be ironed out, not the least of which is what format the data should be in. I want to participate in projects to make something happen in this area, something all citizens can get their hands on. If you’d like to partner with me on such a project, contact me.

My slides from the talk should be online within a few days. I’m glad to say that my talk was well received, but to a certain extent I was preaching to the choir. We have much work to do.

So yeah, I meant it: give us our data, and I meant it strongly. No kidding: unleash our data!

It’ll take time. Let’s get to work.

—Addition 9/22/09:

I do this with some trepidation, because the slides are not the talk, they’re just the visual aids. But so many people have asked, I’m posting just the slides.

I also haven’t taken the time to touch up the animations and slide-to-slide transitions; if a slide doesn’t change after 5 seconds, click or right-arrow. (Some of the animations are subtle, e.g. the bursts that show where my metastases were.)

Comments

Thanks, Dave, for doing such a great job highlighting this issue. It’s one of the top issues in my life.

Ultimately, I think most health issues are “data issues” — according to my chiropractor, the human body is comprised of 100 trillion cells, each of which is doing about 6 trillion things per second — and each cell instantly knows what the other cell does. That’s a lot of data sharing.

What we do (or do not do) with that data is a key component of health. Certainly, we likely cannot be cognizant of all that cellular activity, but we can do things that make it easier for us to interpret what our bodies are doing and directly or indirectly communicating to us.

On a larger scale, what healthcare data we have access to, can literally determine whether we live or die, so I’m not entirely certain why some providers are so determined to wall us off from our data. There’s the culture, of course, and there’s the poorly designed, shoddily implemented, and inadequately supported IT systems that are the vexation of my own doctors. But I think people in power lose the forest for the trees — they forget how much power they have, and they lose sight of the main reason they exist — so that we, their patients, can continue to exist, as well.

Personally, having been in the heady malestrom of financial services sector for the past 10 years, and having worked in high tech since the early 1990’s, I cannot for the life of me understand the insufficiency of so much healthcare IT. I work at a company which stewards billions upon billions of dollars, and the controls and processes we have in place safeguard every single cent, every single moment of every single day. We have total accountability to our customers, and if they say “make this easier or I’m leaving” well, we make it easier. No excuses, no shortcuts. We just do it. How much more important is the data of an individual with a serious illness — or any illness, for that matter? — than the dollars in their coffers? It’s a question of priorities.

I hear a lot of folks saying the healthcare system is irreparably broken and we can’t fix it. I don’t necessarily agree. Fixing data issues would go a long way towards turning it around. From database design to common syntaxes and data formats to just having systems that are interested in talking to one another… we have plenty of opportunities to improve, and I’d hazard to say we have the resources.

After all, we actually do have an abundance of available people who have participated in and help to create a world where accountability for data quality and accessibility isn’t just a wished-for goal, but a fact of everyday life.

Consider for a moment — financial services firms have been avidly shedding personnel, and I know for a fact that there is an abundance of highly trained and security/privacy-obsessed top-flight IT talent in the job market today. The same standards that produced financial powerhouses are all but baked into the DNA of a whole lot of job-seekers out there. So from a practical standpoint, there is absolutely no logical reason we should be in this sorry healthcare IT state.

It’s vision that’s lacking. And a cultural commitment to attracting, hiring, and retaining top-flight IT talent who make privacy, security, data accessibility, and user experience their mission in life. I’ve experienced it myself — while taking a break from financial services to catch my breath for a few years, I did a 9-month contracting stint with a healthcare provider. Their eventual permanent job offer to me “docked” me 10% of my salary because I didn’t have the exact sort of higher education they required. I left. I wasn’t just an experienced IT professional. Years before most people thought email was worthwhile, I was on the front lines and the leading edge, maturing the technologies that would eventually be turned into curriculae for the kind of education I formally lacked. On a smaller (and much humbler) scale, it was like someone telling a person in Thomas Edison’s lab that they couldn’t get their electrician’s license. I could have helped those healthcare folks a great deal, had I been allowed to, but they were locked into the idea that IT people need to be trained the same way as, say, doctors or hospital administrators. So there was a huge disconnect. I left healthcare and returned to financial services, where results are seen for what they are — valuable results.

Ah, I see this comment is running on. I’ll stop now, with the hope that it adds something to the ongoing discussion — one which is utterly critical. It’s truly a matter of life and death.

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[…] This post was mentioned on Twitter by Christine Kraft and James O'Sullivan. James O'Sullivan said: RT @ChristineKraft: Probs with data access are the #5 complaint in the entire HHS Department via @epatientdave, link: http://bit.ly/25CDPq […]

[…] Dave blogged about each day of the retreat. I’m going to share the links and invite you read and comment, either here or on Dave’s blog. I’ve had a few good chats with Dave – he’s very enthusiastic about Lean because it’s patient-focused and he’s the type of guy who is just wired in a way where Lean makes sense. It’s intuitive based on his previous business career – but now Dave is a full-time advocate for patients and “e-patients.” Check out his site, as he has a lot of videos and presentations, including “Gimme my damn data.” […]

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[…] and most other critically important information about a patient’s health. This has led my friend e-Patient Dave to focus on the key refrain “Gimme My Damn Data” as a critically important theme for empowering patients. He’s just leading the charge here, […]

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